Category: Chronic lower back pain

Lately, I’ve read several articles about the need for keeping a journal or diary of chronic pain levels. At first, I skipped the articles and went to my business of writing. However, the more I read, the more I decided this activity would be beneficial in many ways.

You ask, “How will keeping a pain diary or journal help me?”

I’m glad you asked! Keeping a journal or diary of your daily pain activity chronicles your “ups and downs” with pain. For example:

your pain level is higher on rainy days

your sleep is disrupted because your pain woke you up

a change in medication dosage may lower or increase your pain

These are a few of the actions you can chronicle with a pain diary. Over time, you’ll have a detailed report for your personal needs and for your doctor to review. Depending on Your pain results help your doctor manage your pain more effectively. He will see the symptoms of your pain and how it varies depending on the time of day.

There are “apps” specifically for tracking your pain levels. But after reading Jo Young’s article, “How I Started a ‘Pain Diary” (and Why I Think You Should, Too) I created my own diary with columns specific to my needs. Using Excel or a spreadsheet of your choice, below are sample column headings you may find beneficial:

DATE

MORNING (Pain level 1-10)

AFTERNOON (Pain level 1-10)

NIGHT (Pain level 1-10)

DOSAGE OF MED-X (Dosages and frequency can affect your pain level.)

DOSAGE OF MED-Y

DOSAGE OF MED-Z

WENT OUTSIDE? (Sometimes we just don’t feel like going outside, like today)

MENTAL STATE (Bad, Very Bad, Neutral, Good, Very Good are some suggestions)

Your entries offer valuable information to help you cope with your pain. In addition, your pain diary helps your doctor’s decisions to manage your pain more effectively. And remember – start a pain diary if you were just diagnosed or experienced pain for years! After a few weeks, you’ll begin to see a pattern of your pain levels and what appears to affect it.

Would you mind letting me know when you start your pain diary or journal? And would you share your findings? I won’t share your personal information but may use your findings (along with other readers) in a blog post!

Thank you for stopping in to read! I appreciate your time and look forward to your comments!

If you haven’t signed up for “Patients Like Me” this post will give you more in-depth information about this unique website. As a patient with chronic back pain, Fibromyalgia, and joint inflammation and pain I have found Patients Like Me (PLM) offers a way to track my daily symptoms, conditions, and treatments. Let me explain.

The goal of PLM is to help patients become involved in the care of their conditions – Fibromyalgia, chronic pain, Rheumatoid Arthritis, Lupus, Bipolar, or any health condition that involves symptoms that the patient may be dealing with. You (the patient) gives data to PLM and they (PLM) gets that data and processes it into information for You.

You (the patient) give data (your conditions, symptoms, treatments) to PLM and (PLM) gets your data, processing your information into “data points” These data points are combined with all the conditions, symptoms, and treatments of patients in their system. This information is then available for YOU to see and explore.

If you have chronic back pain you can look up how many patients have your chronic back pain, their symptoms of chronic back pain, what medications they take for chronic back pain, and how they cope.

Click on CONDITIONS at the top of your dashboard

If you have listed chronic back pain in the system you can find your condition from “My Conditions” at the right of the form. Or you can “look up” chronic back pain in the space provided.

Type in Chronic Back Pain.

You will find Chronic Idiopathic Back Pain which is pain that lasts for 3 months or more.

Below Chronic Idiopathic Back Pain are an Overview of the patients in PLM by age, sex, and the start date of this condition.

Look at the table on the left and you’ll find sections on “How it affects people,” “How people treat it,” and “Compare treatments.”

Click on “how people treat it”

As of the date of this post, there are 79 treatments for Chronic Idiopathic Back Pain listed by patients.

You can shorten the list by the “Top 10 treatments”

Click on Hydrocodone (for example) and you’ll find an overview of the drug. Below is a chart of the reported purpose and perceived effectiveness

1166 patients take Hydrocodone for pain. As you scan through the chart you’ll see the other conditions Hydrocodone is taken and how effective it is for patients

You can look up your conditions and symptoms in the same manner. This information may not seem relevant, but once you are able to compare the evaluations of other patients you find you aren’t alone is this battle to cope with your condition. You can even find info about how other patients take a medication, with food or without food.

Explore the site to see if it is the right fit for you. I’ve found it’s a great way to track my progress by submitting my daily info. Charts show me if a medication is working, how my symptoms change, and a detailed chart I can take to my next appointment with my pain management doctor.

I was amazed that she wanted the info to put in my chart. She found it interesting and a great tool for her to see how I progress. Take a moment to check out PLM. It might be a good fit for you or you may feel you just don’t have the time to submit your information. But look at it this way. If you submit your information you are contributing to PLM’s research and their commitment to sharing people’s information to clinical trials, the FDA, AstraZenaca, Takeda Pharmaceuticals, and M2GEN (cancer patients research team.)

Thanks for reading and let me know if you join PLM. I wish you a day with very little pain so you can enjoy doing the things you love to do!

Finally, after weeks of inflammation and burning pain in all my joints, I have started on the generic brand of Celebrex! (I took this medication years ago when it first came on the market and then was taken off the market due to symptoms of heart problems in patients.) My PA explained Celebrex was doing a great job now and thought I would have good results with it. And she was right! Within 24 hours my inflammation was down and the pain level in my joints was as low as a 2 or 3. I believe it may be helping my lower back, where I have arthritis because my back pain level has been lower, also!

Isn’t it great when you try a medicine and it actually works? There are several medications I’m on that make me wonder if they are doing anything for me. My doctors usually answer that if I were off of the medicines I would see how they are helping me. And although I consider taking myself off those meds, I don’t believe I want to go through the process of getting back on them. So far now, I’ll stick to my medication list.

Today I want to introduce you to a great site I found called Patients Like Me. I came upon this website by accident. After reading the synopsis of PLM I decided to join and see what it could do for me. Bottom line…this is a great site for anyone with hidden illnesses and any illness that impairs you with pain, discomfort, or wishing you knew somebody with the same problems.

PLM claims over 500,000 patients with over 2700 conditions on the single mission of putting patients first! And when you join you’ll understand this statement more thoroughly. PatientsLikeMe is the brainchild of Jamie Heywood, whose brother, Stephen, age 29 was diagnosed with ALS in 1998. Together with brother, Ben, Jamie tried treating his brother’s symptoms and slowing the disease even though it progressed rapidly. Jamie and Ben realized that researching for information and answers to help their brother and his disease was time-consuming and difficult.

Along with another friend, Jeff Cole, the brothers initially launched PatientsLikeMe to connect ALS patients, but it quickly expanded, and in 2011, [they] opened the website to all patients and all conditions¹. Fortunately, for us, we have the opportunity to be a part of PLM and contribute to the research of our diseases while forming relationships with patients, listing our medications, taking forms to our doctor visits, and reporting our daily symptoms. All of these items contribute to the goal of PLM: “a free website where persons share their health data to track their progress, help others, and change medicine for good!²”

I’ve been a member since March of this year and have already met so many new friends through this wonderful site. Not only do you enter your medications for your own needs, but you learn how many PLM patients are on the same medication, encounter similar symptoms, and give advice on taking the medication and how they alleviate their symptoms.

Each day you receive an email asking “how are you feeling today?” PLM is not looking for sugar-coated answers to this question. You tell it like it is. Log in, mark the face you feel at the time you log in (Very Bad, Bad, Neutral, Good, Very Good) and then you can give an explanation of your feeling. This is optional but this piece of information gives you insight into other patients’ symptoms and how their pain is affected by the weather, stress, and frustration.

Because I don’t want to bore you, I’m going to stop for now. But in a couple of days, I’ll post a follow-up to this note with more information on PatientsLikeMe. If you join, please let me know so I can start following you! My username is CNRobin62 and I believe you can search for me and follow me. Then just send me a note that you joined per my blog post. We’ll chat and before you know it you’ll have an arsenal of like disease friends who understand your feelings and frustrations.

For now, enjoy the rest of your day and I hope you have a wonderful week ahead. Thank for reading and I look forward to our next meeting!

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I’m back! And I made a major decision two weeks ago with my pain management doctor. I told him I wanted the Spinal Cord Stimulator removed from my back. He looked at me intently and asked, “Why?”

Then I went through my list of prepared reasons:
1- it doesn’t work
2- my pain has increased and the SCS isn’t even touching the pain
3- the battery bothers me
4- little strikes of pain are felt along my spine

He smiled and said, “Okay.” The reason for his question, he explained, was most patients begin to give reasons for wanting the Stimulator removed and realize they don’t have a valid reason. The SCS helps them at some percentage (the best results say 50% pain is removed) and they decide to leave it in.

However, with me it’s a different story. The trial for the SCS went great. One lead was inserted in my right side and left in my back for 5 days. I had no pain on my right side. But my left side hurt continuously.

When the right lead was removed, all my pain returned and I knew this was the product for me! Finally, quality of life would return and I would dance again.

Unfortunately, after the implantation of three leads and the battery pack, and numerous reprogramming… my pain has been with me every day since the surgery. In fact, it has increased. I didn’t enjoy the relief I received from the trial. Why? Nobody knows. But it would have saved a heck of a lot of money and discomfort if that darn trial hadn’t work.

I’m not saying it doesn’t work for everybody. Just me. It works for my husband. His SCS gives him about 30% decrease in his back pain with medication. (Yes, even with the SCS most patients take medication to manage their pain.)

I’ve read countless reports of how the SCS “gave me my life back” and I did my research prior to the trial. I didn’t go into this without thorough information. Yet, it didn’t work.

How do you know if the SCS will work for you? First, I would suggest you have the same doctor perform the trial and the actual implant. (It took half a dozen doctors before I found one who agreed to do the surgery due to the instrumentation in my back.) If you have the same doctor do both procedures, and I believe in most cases that is the correct approach, then you’re ahead of the game I played.

Secondly, research, research, research! Talk to other patients who have had the SCS implanted. Try to find people with similar back problems, and ask them a ton of questions.

And lastly, depending upon the Spinal Cord Stimulator Company your doctor uses, go to their website and read the reviews, find out what to expect, and ask questions on their site. Most companies have a patient forum but if you can’t find one, Google – Spinal Cord Stimulator Patient Forums. These are the ones I found:

As with any medication you are prescribed, you look it up, check out the side effects, and read the reviews before taking the medicine. With the proposal of a Spinal Cord Stimulator, treat it as you would a new medication.

RESEARCH IT!

I’m having the battery pack removed, not the leads because they have adhered to my spine. But when I talk to the surgeon and have the surgery, I’ll let you know how it went. Until then….

Here’s hoping you feel better today than yesterday and even better tomorrow!